Raising teens with autism takes patience and an ability to expect the unexpected. It’s a hard road, but a road with honor.
Estimated reading time: 8 minutes
As a teacher’s aide in an autistic classroom I was able to observe what a difficult task parents have. Raising teens with autism takes patience and an ability to expect the unexpected.
I was the aide to Sheri, age fifteen, who towered over the three staff members in our Autistic-Impaired classroom. She was non-verbal, but used hand motions and feet stomping to communicate her wants. As her aide, I was assigned to help her learn basic skills and for the most part we got along well. But Sheri was used to getting her way. Her teacher found out later her parents had told her other three siblings to give Sheri whatever she wants.
I found out how strong-willed she was during lunch one day in the cafeteria. Sheri stood in line in front of me when she noticed the girl ahead of her had a barrette that she wanted. She motioned to the girl that she’d like it for herself. Obliging, the girl took it out of her hair and started to hand it to her when I intervened, as we were teaching Sheri not to beg. Before I knew it, Sheri had turned around and slugged me in the arm. The lunch crowd around me parted like the Red Sea as students watched the incident. I imagine Sheri and I were the topic of many dinner table discussions that night. Sad to say, she had other episodes and eventually was kicked out of school.
On the flip side we had students with the opposite temperament. Robbie, a sweet-natured young man, never asked for anything for himself. To overcome his passivity, Julia, his teacher, worked with him to learn to assert himself.
One day we ordered pizza for the classroom and each student received a piece. A few minutes later all but Robbie asked for a second piece. The staff and students carried on about how delicious the pizza was, but there was still no request from Robbie. He rocked back and forth, getting more agitated by the moment. He craved a second slice, but it went against his timid nature to ask for anything. Finally he blurted out, “I want a second piece, please.” We all applauded him as he had broken through one of his emotional barriers.
Parenting teens with autism adds stress to a family. Parents may not have to confront major meltdowns in the school cafeteria but their teens may struggle with other difficulties. According to Doctor Michael Rosenthal of the Child Mind Institute, teens with autism struggle to learn executive skills such as flexibility, organization and initiation (of activities) “In kids with autism spectrum disorder, cognitive flexibility is the standout problem for them and seems to remain a problem as they get older,” said Rosenthal.
The frustration in not mastering these basic life skills shows up in tantrums as parents find themselves suddenly fielding more phone calls from school. Part of the problem lies with the student finding him or herself in high school with less staff members and therapists to help them steer their way through the school day.
A social setting can turn into a minefield for a teen with level two or three on the autism spectrum . This lack of emotional control can cause their peers to perceive him or her as childish, which opens them up to bullying. Parents can help by stepping in and teaching their child how to identify and manage their emotions.
Of course the opposite can happen when a teen cloisters themselves in their bedroom with their iPad, becoming isolated for hours. You, as a parent, find yourself in a delicate balance of having to constantly weigh protecting your child in an unfriendly world versus nudging them out into more social settings.
Church is another troublesome problem for families with autistic children. Believers want their child to grow spiritually learning biblical truths. But it’s difficult to find a church where they fit in as a family. Unfortunately many churches lack the ability to accommodate a child with an atypical neurological brain. It takes forward-thinking leaders to educate their congregation to understand autism and to support their families.
John VanderVoort’s youngest son, Travis had minimal verbal skills and faced a lot of frustrations so the VanderVoorts worked hard to create a warm atmosphere where they treated him as a typical member of their family. They made a point of always talking to him with respect. In addition, his brothers and sisters adored him. In spite of Travis belonging to a loving family, the teen years grew into an unexpected nightmare.
During a meltdown, Travis would turn from Bruce Banner into the Hulk. He would rip pictures off of the wall and punch holes in drywall. An incident could be triggered by simple aggravation, such as a forgotten password that locked him out of his iPad. “When a family is in the middle of this crisis they feel helpless,” said VanderVoort. “We often ended up in the ER at the hospital. His mother even called the police when he became out of control. You can give a shot for a seizure but not a tantrum.”
Teens on the autism spectrum need security and stability, so keeping a consistent schedule cuts down on meltdowns. Unfortunately the divorce rate for parents of autistic children is higher than for the main population, and when Travis was a teenager his parents split up. Both parents decided to make the transition as easy as possible for their son by keeping some consistency. Since Travis loves his electronic toys, The VanderVoorts decided that having identical items for his iPad, or gaming system helped him adjust better to the two households.
Screens can be important for your teens, but think about stretching your child. Take them somewhere new. Teach them a new skill. Teens with level three might learn how to set the table for dinner. Teenagers with level one or two could learn to be a greeter at church. It won’t be easy but with a little push parents can help a teen get out of their comfort zone. They will always have a teen who needs to stem, but try to pull them out of “Autismland” (a term coined by Ido Kedar, an autistic young man who wrote the book, Ido in Autismland).
As parents anticipate the teen years they need to plan ahead for the future. Travis, now in his early twenties, lives in an AFL, an Alternative Family Living home. It’s a place where there is a father and mother and a brother and it’s a way to be “grownup” in a safe environment. He pays rent and keeps busy with his daily schedule.
Other parents choose to keep their child at home or put them in a group home. Whatever the decision, it’s not too soon to talk to other parents and school personnel about what’s out there for your teen with autism.
Give your teen a chance to meet people through different activities.. Are there clubs in your area for kids with special needs? How about the high school prom? In the school where I worked, our level three A-I students paired up with the kids in the resource room and they all went as a group to the dance. Thankfully, many high school administrators and staff members have become more sensitive and accommodating to special needs teens. With help from their teachers and aides they can have a night to remember.
A job can also integrate a teen into the local community. Our students handed out breadsticks at a local Italian restaurant and cleaned machinery at a local factory. If there isn’t a job available, a resourceful parent can create one. A mom in Mooresville North Carolina set up a paper shredding business for her and her son to run together. For a certain fee, mother and son would pick up documents and papers from people in the community and take them home and shred them. It’s a win-win program: the son’s self-worth grows and he is making money!
Don’t overlook summer opportunities. A camp in New England opened their doors to a student with Asperger’s syndrome (now known as level one under the broader diagnosis of Autism Spectrum disorder) who worked as an honorary staff member helping out in the office. If an overnight camp doesn’t work out, a daytime program like Wings of Eagles, a horseback riding stable catering to special needs populations might open doors for your child. Often a teen with autism spectrum disorder connects with a horse on a different level. Whatever the activity, the goal is to help your teen learn new social skills.
Sunday can be one of the loneliest days for families with autistic children. When visiting a new church, parents might receive dirty looks from people in the congregation who can’t understand why those parents can’t control their child. The VandeVoort family in Charlotte, North Carolina, became tired of tag-teaming every other Sunday with one parent sitting in the church parking lot with Travis while the rest of the family worshiped together. Finally John VanderVoort met with the pastor. He and his pastor set up a special needs Sunday school where parents would have a safe place for their child. Eventually the VanderVoorts expanded and started a small group in their home where the families were welcome.
Parents of teens with autism constantly balance trying to protect their child in a sometimes unfriendly world, while also teaching their nearly adult child some independence. It’s a hard road, but a road with honor. “God has answered all our prayers about Travis,” said VanderVoort. “He’s a contributing member of society.” So be encouraged by the verse that says, “ And I am sure of this, that he who began a good work in you (and your child) will bring it to completion at the day of Jesus Christ.” Philippians 1:6.
Carol Grace Stratton lives in North Carolina with her husband where she enjoys hiking, gardening, entertaining, and playing with her eight grandchildren. She is the author of four books, two which feature an autistic child (Lake Surrender and Deep End of the Lake).
Her website is: https://www.carolgstratton.com/
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